MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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322 This might lead participants to believe that, as “experts”, the Investigators and therapists are working from established scientific and medical principles. This is in contradiction to the theoretical nature of the investigations being tested, ie. the Manuals do not make clear that it is the validity of these theories that is being tested in the PACE Trial and that the assertions in the Manuals have not been proven. The PACE Trial literature is telling participants that Investigators and therapists know that what they are saying is correct, when such is not the case, a situation that many people deem to be unacceptable. In 1997, Michael Sharpe published his concept of cognitive behavioural therapy in which ‐‐ using CFS as an example ‐‐ he described a cognitive‐behavioural approach to somatisation, which he concluded was: “the basis for a new evidence‐based approach to psychosomatics” (Psychosomatics 1997:38:356‐362). Sharpe maintained that: “Patients present with symptoms, but physicians diagnose diseases. In many cases, however, no disease can be found….Such complaints are commonly referred to as somatization, somatoform, or functional symptoms….they lead to a considerable, but largely wasted, expenditure of medical resources on clinical investigations”. Sharpe set out his concept of cognitive behavioural therapy, explaining that it was originally developed for the treatment of depression and that it is based on a theoretical model of illness which assumes that (1) illness is best understood using a broad perspective of biological, cognitive, emotional, behavioural and social components and (2) these components interact to perpetuate illness. In Sharpe’s model of “illness components”, it is important to note his interpretation of the biological component: “Standard biomedical investigations are typically negative in CFS. This does not mean that the illness has no biological basis and a number of physiological abnormalities have been identified. These include decreased physical fitness or ‘deconditioning’ ”. There is no mention of organic pathology in Sharpe’s model of the perpetuation of CFS, thus in his model, biological abnormalities extend only to loss of physical fitness and do not allow for pathogens such as viruses. According to Sharpe, “An important implication of this model is that psychological and social factors are regarded not only as consequences of the biological disturbance but also as causes of the disturbance”. Sharpe’s reasoning is thus circular: according to him, the effects of a cause can be the cause of the cause. This statement by Sharpe may alert readers to the fact that normal standards of thought, science and logic appear to have been suspended in relation to their model of “CFS/ME” (which claims that biological, psychological and social factors all interact to perpetuate illness), because what is not explained is that these factors cannot suddenly start interacting only when people become sick ‐‐‐ they must be operating all the time in nature, so how can they be the cause as well as the consequence of illness behaviour? Such a concept appears to be what has been described by a Professor of Neurology as “psychobabble” that lacks all scientific merit and should be totally rejected (“ME:PFS: Diagnostic and Clinical Guidelines for Doctors”; ME Association, 1991). Of even more concern is that the Wessely School’s beliefs about ME/CFS appear not to have advanced with the progression of medical science over the last twenty years. Regarding CBT treatment for CFS, Sharpe concluded: “If the described model is valid, changes in relevant cognitions and behaviours should facilitate normalization of physiology and speed recovery”.
323 Despite the fact that this was nothing more than an unproven and incomplete model, Sharpe stated: “We need to increase the influence of the cognitive behavioural perspective, with the aim of achieving a paradigm shift in medical thinking and practice”. Many people believe that the PACE Trial is a major step in promoting that paradigm shift and that the consequences for people with ME/CFS will be profoundly damaging.
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MAGICAL MEDICINE: HOW TO MAKE A DIS
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Section 3: Consideration of the MRC
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5 MYALGIC ENCEPHALOMYELITIS/CHRONIC
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Introduction MAGICAL MEDICINE: HOW
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9 associations purely in order to
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11 “It’s not an illness that pe
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13 release that is not found in hea
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15 “The second clinical implicati
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17 In January 2003 the wife of Rich
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19 biomedical aspects of ME/CFS wer
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“Social factors 21 “Several of
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23 Despite the substantial evidence
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25 as possessed by devils or spirit
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27 However, as Crombez G et al poin
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29 Professor Anthony David’s resp
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31 From these beliefs of the PACE T
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33 warning about dependence being e
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35 This is unequivocal: according t
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37 Those studies, however, have bee
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39 The answer may be found in the f
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41 than giving actual numbers of pa
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43 deconditioning caused their illn
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45 Legitimate access has been obtai
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47 Goldstein’s search took a litt
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49 says about GET: “GET will be b
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51 The whole concept of “a CBT mo
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53 International concern about the
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55 The CISSD project was the brainc
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57 are changed in IBS lends credibi
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59 (http://www.entretiens‐du‐ca
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61 As Jonathan Rutherford, now Prof
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63 There are many who would profoun
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65 The term “CFS/ME” was carefu
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67 ill‐health and disability is d
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69 “The sick role does have advan
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71 Such is the influence of the Wes
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73 Editors of broadsheet newspapers
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75 Collins J who found that the UK
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77 The “Invitation to join the PA
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79 On 10 June 1988 Wessely provided
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81 “There is a record of a confid
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83 (6) Another, more recent illustr
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85 psychological hypotheses of caus
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87 Of particular note are the follo
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89 • “Two forms of treatment…
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91 patients with chronic fatigue st
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93 • Another UNUM policyholder, A
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95 “Over the twenty years I have
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97 a functional somatic syndrome),
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99 protein and serum amyloid A (whi
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101 their cortisol response, in tha
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103 exposures. Responsibility for t
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105 illness (and) these biases have
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107 diagnoses before (ME)CFS onset,
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109 He noted that: “The most extr
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111 According to Professor Nancy Kl
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113 95% have abnormal cognitive‐e
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115 In 2003 a UK study of skeletal
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117 “ME/CFS describes a disorder
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119 proposed for treatment‐resist
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121 page 381: “Arrhythmias are fr
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1995 123 “The use of cardiopulmon
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1999 125 “This study examined the
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127 cardiac output. This present st
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2005 129 On 10 th April 2005 Carol
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131 The next system to be compromis
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2005 133 Researchers at the US Cent
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135 In ME/CFS, these serious issues
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137 confirms reduced functional cap
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139 haemodynamics and an increased
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141 perhaps all, of the symptoms of
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2000 143 In 2000, the CFIDS Associa
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145 includes haemodynamic assessmen
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2003 147 German researchers Siessme
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149 producing any evidence of damag
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151 English and Australian reports
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2006 153 “(ME)CFS is a poorly def
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155 These recommendations note that
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1990 157 “In order to characteris
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1994 159 “The chronic fatigue imm
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161 symptoms not currently in the C
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1999 163 An article from researcher
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2003 165 “(ME)CFS is an increasin
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167 Commenting on this paper, Dr Ne
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2007 169 “For decades, (ME)CFS pa
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171 Documented abnormalities in the
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1996 173 De Lorenzo et al noted tha
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175 identifying biomarkers…It is
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177 analysed the gene expression in
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1955 179 Acheson described and comp
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181 (In the light of the discovery
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183 psychiatric symptoms…as commo
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185 The presence of the LMW RNase L
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187 to investigating the bioavailab
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189 the blood of patients with AIDS
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191 displayed by (ME)CFS patients.
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193 Moreover, recent research has s
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195 In August 1991, together with c
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197 “The data do not support the
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199 Lerner Research Institute who i
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201 It is regrettable that the UK M
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203 Notably, Dr Stuart Le Grice, he
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205 that the majority of patients f
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207 “Just because one is blessed
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209 They would do well to remember
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211 itself said at the time: “stu
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213 muscle, endocrine and lymphoid
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215 “ ‘I don’t take the Briti
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217 “This is a major concern give
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219 “The availability of sensitiv
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221 impinge upon medical decisions
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SECTION 3: Consideration of the MRC
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225 such as multiple sclerosis in w
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227 of 600 participants. Issue 3 of
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229 Dr Gabrielle Murphy is/was part
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231 trials…are open to the charge
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233 Given that the Oxford criteria
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235 maximised by the collaboration
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237 c) I had been told by Dr. X (th
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The Investigators’ Reasons for th
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241 In his presentation entitled
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243 Peter White, however, asserted
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245 To many people, it is incompreh
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247 In her communication of 16 th J
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249 a) emotional lability….b)…d
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Undue influence on the PACE Trial o
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253 Pensions) and copied to the PAC
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255 only one database. This will be
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257 Conflicts of interest of those
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259 • a copy of the original prop
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261 There is another curious aspect
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Fraudulent research (Cargo cult sci
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265 It seems that, in comparison wi
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267 Initially, the Trial Investigat
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269 Information on other abnormalit
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Page 283 and 284: 283 health problem. There is no des
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Page 309 and 310: 309 The Judge said: “The ‘psych
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Page 315 and 316: 315 17 th July: 1‐8 (Epub ahead o
Page 317 and 318: 317 The APT Manual for Participants
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373 are the “solutions” that ar
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375 The section beginning on page 4
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377 Three months after the end of s
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379 Participants were to be given a
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“Budgeting Energy: � Evaluating
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Comments by participants in the PAC
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385 Page 5 of the SSMC Manual infor
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387 illness is non‐biological…
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389 • have the main symptom of fa
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391 dispute/negotiation of benefits
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393 Appendix 6: Summary of Therapie
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395 There can be no doubt that, for
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397 evidence for a specific persist
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399 To imply that patients can reco
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401 (8) The Investigators did not i
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403 (15) The Investigators and some
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405 ME/CFS have reduced blood volum
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407 PACE Trial is about “Health e
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409 APPENDIX I: Dr Tony Johnson, De
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411 “I have advised many clinical
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413 “Fibromyalgia patients are in
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415 who do not agree to take part i
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417 Appendix III: Dr Melvin Ramsay
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419 • “It is not only people in
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421 “It will be imperative that h
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423 “It is important to understan
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425 with what look like exhaustive
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427 To date, MPs’ postbags contin
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429 APPENDIX VI: The Wessely’ Sch
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431 They explain that historically,
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433 Why would two PACE Trial Princi
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435 • deniers engage in “comple
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APPENDIX VIII: Two FINE Trial Case
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439 After four months, Miss C’s h
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441 What an extraordinary claim: wh
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